I wonder

I sometimes wonder if by not having a diagnosis for Boo-itis our lives are easier than others. This past weekend when we had our semi-family reunion a cousin was telling me the story of a co-worker whose twins had a horrible syndrome. The daughter had already gone home to Heaven at only 3 years of age and the son was likely to go home by age 6. The parents had lived with the knowledge that their twins would most likely not survive long in this world and felt blessed by the short time they had. L asked me if the doctors have any idea what is wrong with Boo (in a nice way where you didn’t want to slap the person). I explained that the doctors say Boo is an enigma, that she just doesn’t add up to what science knows to be true. But that, finally, I am okay with the not knowing if Boo has X syndrome or Y whatever. Because at the end of the day, no child comes with a user’s manual.

Visiting the hospital with Boo I constantly think to myself, there by the Grace of God do I not have to travel that road. I have an acquaintance I met in the waiting room of Boo’s therapies. She knew from ultrasound and lab testing that her child would be “special”. She believes that because she and her husband were able to prepare for a life with a disabled child, she had it easier than us. We had no idea that Boo would have to be such a fighter, nor that we would learn that being a parent also means being an advocate.

Boo’s difficulties (to my mind) are manageable. She is happy and relatively pain-free. Boo is growing, taking her time about it, but growing. She hasn’t been hospitalized (almost) a year. Boo is learning, again at her own pace. Boo is just Boo.

By the doctors not being able to tell us what to expect, we can expect the world for Boo. At her last neurology appointment they told us she would be eventually labled intellectually disabled, no known cause. However they cautioned us to live life as we have. To continue to push Boo to her potential (just as we do Allie) and to continue to harrass her medical specialists to provide the best care possible. The neurologist (who has had Boo since the NICU) admitted at this appointment that she never thought Boo would walk or talk. That looking at the child she was in her first year, they never expected her to make the gains she has. But they were determined not to undermine our desire to acquire all the therapies possible.

So even the doctors expect the world for Boo.

Sure I continue to wonder why and stay up at night wondering what could have prevented her having such a hard road to travel. And I will continue to Google and generally harass Boo’s physicians and therapists for answers. I do wonder if finally getting a diagnosis will help Boo or hinder her progress.

We are undiagnosed, and still okay with that. But that doesn’t mean we stop looking for answers.

One thought on “I wonder

  1. GirlWithTheCane

    A colleague and I often discuss whether having a diagnosis helps or hinders…as someone who's how people do in both groups at various points in life (and been very involved in the lives of some of these people as their workers/friends), “intellectual disability” has gotten people that I've supported the services that they need, without any indication of what the cause is. Sometimes I've assisted people to apply for services without a clear diagnosis, and rarely has it been an issue (I'm in Canada).

    It tends to be a bit of a different discussion with autism, for a variety of reasons. But I like your thinking on this, and I'm glad that your doctors are backing you up – what are the best ways to help Boo reach her potential, given the challenges that she faces at any given time? Which is the question that doctors, therapists and educators should ask about all children, really…

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